Saturday went well with antibiotics being taken without too much difficulty.  I gave Maureen breakfast in bed, while playing  YouTube in the background.  I continued with the musical input once she was downstairs and we watched excerpts from a couple of musicals.

We made lunch together: with Maureen peeling and chopping the ingredients for vegetable soup.  I slipped in beside her on the clearing up duties, and eased her away from the sink.  Her efforts at washing up were pretty fruitless but drying up didn’t pose any problems.

Maureen took to the sofa for a couple of hours after lunch, and on waking made for bed. She remained for the rest of the day and night.  I have taken her drinks up periodically, and kept her on schedule with medication.

These frequent trips up, and down, stairs take me back 40 years to the time I was giving ‘Bromptons Cocktail’, to Annette my 29 year old wife. Whenever, I feel jaded I count my blessings that Maureen is expected to live well beyond ‘the roses coming into bloom’: the prognosis at that time for Annette.  I am hoping that infection is behind Maureen’s lack of energy, and confusion, rather than a permanent dip in her presentation: only time will tell.

This afternoon I have some special time out.  Our social worker has kindly arranged additional care so  I can go to a local Club to watch Coventry City play Sheffield United on Sky Sports.  I hope those Blue Boys don’t let me down: I need something to give me a lift at the moment!

It all makes sense now: why Maureen has been so tired and confused over the last few days – infection is dragging her down.  A course of antibiotics should do the trick, and things should improve fairly quickly.  It’s another one of those occasions where there is no going without pain.  The pain being the difficulty in getting Maureen to take an additional four tablets a day.

Maureen is confused about how she has got an infection.  Her questions have come thick and fast: seeking an explanation about what has caused the infection; when she has to take the antibiotics, and for how long?   Unfortunately, the infection is adding to her general confusion and all of this is difficult for her to absorb and understand.

At first Maureen was in despair over the news of the infection, and I encouraged her to try and sleep it off.  She awoke in the evening looking a little more sprightly, and I let the music play.  With Art Garfunkel to accompany her she gave a good rendition of a couple of numbers.  So then I went for the jugular and put on South Pacific and with her soup spoon in hand she once again: ‘Washed That Man Right Out of Her Hair’ – Get the Picture?

It is likely to be a challenging  few days until the antibiotics kick.  I need to be patient and yet again draw on the wisdom of Teepa Snow.  These  5 Tips for Care Partners are a useful reminder of where I need to focus my attention in the next few days:

1) Step back first

Before you do anything, take stock of what’s going on in the environment, observe the person and their behaviour, be mindful of the moment in time – forget about what happened an hour ago or yesterday. The reality of a person with dementia can be extraordinarily dynamic. Ask yourself what is going on for them now, at this particular point in time, before you say or do anything. (See also: 1) the “B” in BANGS; and 2)  the “A” in BANGS)

2) Respond don’t react

It’s easy to get caught up in reacting to other people and in the process behave in ways that are unproductive. With the help of a counsellor as well as by teaching myself through experience, I learned to look at my own reactions to “problematic” responsive behaviours which I discovered I often provoked myself! That was an eye opener I can tell you.

Once I identified that I was part of the problem, I was able to respond in much more helpful ways and thus become part of the solution. (See also: the “A” in BANGS)

3) Have a plan

Yes, we need to fill the day with activities, meals, quiet time, etc. But, and it’s a BIG but, it’s critical to be flexible. The plan we have may not fit with the changing minute-to-minute wants, needs and desires of the person with dementia. Plans are good guidelines. They fail when we try to stick to them at all costs. Better to go with the flow. (See also: the “G” in BANGS)

4) Know about control

Remember you cannot control anyone else’s behaviour, especially someone with dementia whose ability to use reason and logic may be significantly reduced. The only person’s behaviour you can control is your own. Teach yourself to behave in ways that reduce anxiety for yourself and the person with dementia. (See also: the “A” in BANGS)

5) Stop doing what doesn’t work’

Teepa Snow expands on her tips in this short video clip.

What a day Thursday turned out to be.  Talk about after the Lord Mayor’s Show of Wednesday : yesterday certainly took the biscuit. It was a day of extreme contrasts where an emapathetic husband was called for in the morning, and cast adrift as a stranger, or ghost from the past, at bedtime.

Maureen’s early morning concerns were once again about whether her daughter had died.  She couldn’t sort out if her thoughts were a nightmare or reality.  I listened, held her tight, and reassured her that she wasn’t going mad.  I explained that  stroke had damaged her memory of the sad events surrounding Denise’s death. Maureen also wanted to go over the events of her baby son dying over 50 years ago.  Once again I heard a harrowing tale of how she presented her lifeless child to her mother, and asked if he was dead?

It is always difficult to know how to deal with this unresolved grief: particularly as my own approach to premature death has not been psychologically healthy.  When my first wife, Annette, died at the age of 29 I tried to carry on without having a period of sadness: something I paid for later.

Later in the day I took advice from my Admiral Nurse and may seek guidance from Cruse, to check out if there is more that can be done to help Maureen with her unresolved grief.  However, I may not have done so bad as Maureen thanked me and said: ‘now she knew she could move on’ – if only!

The day was realtively uneventful with Maureen spending a lot of time resting.  When I went to dispose of unused tablets Yvonna our local chemist raised concern about the number of blood thinners that had not been taken.  On her advice I contacted the G P and he has encouraged me to battle on trying to persuade Maureen to take Rivaroxaban.

I decided to join Maureen in our bedroom shortly after nine but  she left me in no doubt that I was banished to the spare room once gain.  With a smile on her face she told me that: ‘we didn’t sleep together’.  She then proceeded to bang doors and move furniture about.  This went on for quite some time along with complaints that there were: ‘no locks on the door and there should be’.

At 1.30 am I awoke to hear Maureen on the landing searching for socks.  I joined her in the search and over half an hour later I eased into bed beside her as I could see she was extremely confused.  Her search included rummaging through her drawers considering all sorts of clothing to add to what she had already got on this went on for half an hour or so.

After a journey to the bathroom around 3.30 am Maureen told me that: we needed : ‘do something about the animals in the bed’.   She went on to enquire: ‘what they had said about our problem:  probably a reference to the people who are in charge of ‘this place’.

Around 4 am I decided to call it a day and got up to tidy things up a little.  Despite an eventful night this is longer than I have usually managed to stay in bed for the last few days.  I clearly have to do something about my sleep pattern as I can’t carry on like this!

There’s only one thing I would say about today: TGIF.  Chloe, today’s carer, will be here at ten and I have a physio appointment at eleven.  This gives me an acceptable reason to go out, and have experiences where dementia does not impact on opportunities to converse.  The only problem is that Oliver, my physio, is a Manchester United supporter and he isn’t going to be in the best of spirits at the moment.   However at least he will know who I am!

Postscipt: Never blog early in the morning you might just post at an unearthly hour and I have!